This sums up my current life.
I can run through the entire cycle in a day, week or months. Unfortunately I still suck at reading the signs when to rest.
Last Thursday, I was at the super spoonie stage. Yay, happy, alive, I can do things and that was my plan that morning. I even managed to end up at the “I’m dying stage” within 10 minutes, my system just decided to skip all other stages 🙂
As soon as I feel a little better, I start making all these plans – this time it was swimming.
Always loved swimming and it’s great for MS, guess one of the very few and best sports I could do. My only issue – I own a huge bikini collection but you can’t swim, really swim in a bikini. I would get annoyed in it the entire time and stop after a lane or two.
So….I decided to buy a swimsuit ( sooooorrrryyy) that Thursday morning.
I still blame the swimsuit pressure on my latest relapse 😉 Maybe my body was so in shock that it decided to stop working properly when I entered the store. However, I still managed to take the elevator (!!!!) to the 2nd floor and touch a few bikinis (!!!! See…) before I had the urge to leave asap and call my boyfriend to take me to the ER. Next problem, traffic in Amsterdam, it took him more than an hour to get to me. As I couldn’t stand or walk anymore, I leaned outside against the next corner wall, actually a no no for girls in Amsterdam ( didn’t get any offers though 😛 )
Spent 7 hours in the ER…and yes, I know they can’t help me but I was sent there. The first three hours, nada, nothing happened until they sent me a female Doogie Howser who had to return twice as she forgot some steps in the neurological test. I helped her in the end as I am an expert in it by now – for non MS readers, it’s weird.The first time ever they tested me, I searched the room for a hidden camera. You need to touch your nose with closed eyes, hop around, walk on an imaginary line, balance etc. So far I never had issues with it – this time I failed as my balance was off and, very odd, I can’t walk on my heels only. Again, hardly reflexes. Of course, Doogie needed to call her supervisor and I waited another hour.
In my “other” hospital you have someone check on you every now and then, offer you a drink or even a snack – I didn’t drink for 10 hours. Yep, there is definitely room for improvement and that wouldn’t even cost a lot. Let’s start with communication and a little compassion.
At least I could cry for the first time in forever and used my hours wisely 🙂
Well, now on my third cycle of steroid IVs in 10 months and thankfully I got it. They are very very strict about it in The Netherlands as I mentioned earlier, max 2 a year. “But what are you going to do in case you get an even worse relapse next month?” Most stupid question I heard that day. Just what I needed. I don’t know. Change my identity. Get a lawyer. Leave for another country. I know it’s bad for me but also good. At least hope for a quicker improvement. It’s almost summer and I’m DYING to spend one normal night out. Or just a wine on a sunny terrace.
Buy a swimsuit and probably never wear it.
I want to quit my survival mode and live again.
1st IV is in, as usual, I turned into a Duracell bunny on speed. Loving it, this is how I used to feel. Energy. It’s past midnight and I am AWAKE. Yay! But I know it’s fake 😦
2 more IV days to go and then it’s waiting, wishing, praying, hoping….and exchanging Rebif for something else. Starting all over. Again. MS. Never boring.